This is a multi-phase study that uses two distinct methodologies, hermeneutic (interpretive) phenomenology and autoethnography to explore the lived experiences of self and others.
The three key areas of study are:
(i) the phenomenon of existence when someone is given a diagnosis of MND and in the context of receiving healthcare;
ii) the meaning of living with uncertainty for people diagnosed with MND and
iii) the meaning of supporting a loved one with MND as they die.
The outcomes of this research have significantly contributed to knowledge through the publication of seven peer-reviewed nursing and palliative care journals:
1. Harris DA, Jack K, Wibberley C. The need to consider ‘temporality’ in person‐centred care of people with motor neurone disease. J Evaluation in Clinical Practice. 2023; Vol 29, No.5, 802-807 doi:10.1111/jep.13854
2. Harris, D. (2021) Interpreting end-of-life experiences of the person with motor neurone disease. Palliative and Supportive Care, 1–2. doi.org/10.1017/S1478951521000699
3. Harris, D.A., Jack, K. and Wibberley, C. (2019) Making her end of life her own: further reflections on supporting a loved one with motor neurone disease. International Journal of Palliative Care Nursing, Vol 25, No.6, 284-292 doi.org/10.12968/ijpn.2019.25.6.284
4. Harris, D.A. Jack, K. and Wibberley, C. (2018) The meaning of living with uncertainty for people with motor neurone disease. Journal of Clinical Nursing, 27, 2062-2071. doi.org/10.1111/jocn.14350
5. Harris, D.A. (2017) Doing research drawing on the philosophy of existential hermeneutic phenomenology. Palliative and Supportive Care 15, 267–269. doi.org/10.1017/S1478951516000377
6. Harris, D.A. (2017a) Supporting a loved one living with motor neurone disease. Palliative and Supportive Care 15, 141–142. doi.org/10.1017/S1478951516000134
7. Harris, D.A. (2015) Lived-through past, experienced present, anticipated future: Understanding “existential loss” in the context of life-limiting illness. Palliative and Supportive Care 13, 1579–1594.
The findings of the research are collated and integrated to develop a person-centred model of care that emphasises the need for MND professionals to acknowledge the temporal aspects of caring for a person with MD and their family carers.
This body of work has been cited in 77 published papers:
If you would like to learn about the two distinct methodological approaches, and develop your own unique research studies, then join our e-Learning course.